Kept alive with tubes for nearly 17 years • Hacker News Board

Re: Kept alive with tubes for nearly 17 years

#111

Post by b_tterc_p » Fri, Aug 02, 2019, 9:53 PM UTC

scotty79 wrote: post #86

b_tterc_p wrote: post #64

Earlier quoted context omitted.

> I'm a bit torn because I'm firm realist and I believe no matter how bad life is, it is the only thing that has a value for you because it's the only thing you have. I find this to not be self consistent. you would trade two boring work days for one awesome day right? Two bad weeks for a happy one? There has to be some long tail of uncomfortable days that you would rather enjoy on a shorter time frame, even if the l…

> you would trade two boring work days for one awesome day right In principle you are correct, but in practice you rarely can make such choices because you can't possibly know the future. You can think you are choosing better life by foregoing the treatment, but it turns out that severe symptoms set in sooner than expected and your life's bad anyways. Or you can think you are choosing longer but worse life but the si…

it seems illogical to spend a lifetime making decisions on incomplete information and then foregoing the last one.

I mean I get that people make their own choices. I just am confused that more people aren’t interested in having a death of their choosing. Or even consider it. Like, I have a song that I would like to hear as I’m dying. I want to think and reflect on things and feel safe in spite of the incoming end. I am convinced that with a better cultural mindset we could make death a happy, celebrated, communal event that people look forward to in a bittersweet way. The way most people die to me sound sad for all involved, including the dying.

Re: Kept alive with tubes for nearly 17 years

#112

Post by scotty79 » Sat, Aug 03, 2019, 12:18 AM UTC

b_tterc_p wrote: post #111

scotty79 wrote: post #86

Earlier quoted context omitted.

> you would trade two boring work days for one awesome day right In principle you are correct, but in practice you rarely can make such choices because you can't possibly know the future. You can think you are choosing better life by foregoing the treatment, but it turns out that severe symptoms set in sooner than expected and your life's bad anyways. Or you can think you are choosing longer but worse life but the si…

it seems illogical to spend a lifetime making decisions on incomplete information and then foregoing the last one. I mean I get that people make their own choices. I just am confused that more people aren’t interested in having a death of their choosing. Or even consider it. Like, I have a song that I would like to hear as I’m dying. I want to think and reflect on things and feel safe in spite of the incoming end. I…

The thing is, last moment of your life isn't in any significant way special. It matters just as much which music you will listen in your last moment as it matters what music you'll be listening in exactly 43 minutes.

If you like to make decissions you can make and implement them now.

The thing is decissions are tiresome. You might want to forgo some avoidable decissions and focus more on pleasures of living.

Re: Kept alive with tubes for nearly 17 years

#113

Post by jimmaswell » Sat, Aug 03, 2019, 1:06 AM UTC

neuronic wrote: post #32

baddox wrote: post #9

Earlier quoted context omitted.

That only works if anyone is “listening.”

How many weeks of entertainment will it provide when you are trying to make people notice that your left blinking eye is morse code?

In the movie, he was signaling "kill me"

Re: Kept alive with tubes for nearly 17 years

#114

Post by fjfaase » Sun, Aug 04, 2019, 11:21 PM UTC

scotty79 wrote: post #101

fjfaase wrote: post #56

Earlier quoted context omitted.

I wish you much strength. The kinds of decisions you are facing (have faced) are the hardest you can imagine and can only be understood if you have been in the situation yourself. I believe that nobody has the right to judge them. Last October, I lost my then 61 year old wife to Early-Onset Alzheimers disease. I saw her slowly fade-away and losing all her abilities, returning to a baby-like state. People often asked…

> The kinds of decisions you are facing (have faced) are the hardest you can imagine The thing is there are no decisions to make. She'll be kept alive as long as possible as law and religious morality requires. All the previous decisions that were made were the most reasonable we could take and there were barely any alternatives along the way. The hard thing for us is just experiencing it all the way and beyond.

I understand what you mean. I more mend it, for the people from the outside, who sometimes, so easily, make their judgements and come with their advice.

Although I live in a rather liberal country, the choices are still rather limited. The general approach for people with dementia who are accepted in a care home is palliative care: focus on their well-being, not on extending or shortening life. But there is some room for movement, although the final decision is always in the hands of the responsible physician. For example, as family (or personal representatives) you may indicate that you wish that the administration of antibiotics should start as soon as an infection is suspected or delay it as long as possible, instead of it being administered only to relieve discomfort. We decided for palliative care. But still I felt that there were moments, when choice were made to extend her life. Not with respect to medical treatment, but with respect to feeding her. She was given special high-energy drinks and especially in the last half year, a lot of effort was made to feed her. For example, when she was too tired during a meal time, they would try to give it at another moment. Yet, I felt that I did not have the moral right to interfere or to even bring up the issue. I have respect for the manner in which the decisions were made by her physician and the people who took care for her. Although it was hard to go through the experience, in the end I was at peace with my decision to not to interfere and basically let the professionals make the decisions. But maybe my situation was much easier than yours, because my wife long ago had lost the faculty to know that there were any decisions to be made.

Re: Kept alive with tubes for nearly 17 years

#115

Post by lucian1900 » Tue, Aug 06, 2019, 4:19 PM UTC

Benjamin_Dobell wrote: post #87

lucian1900 wrote: post #82

Earlier quoted context omitted.

How about we just provide everyone with healthcare, regardless of their economic value? There is more to life than money. There is more to humanity than capitalism.

At what point should hugely disproportionate healthcare be provided to select individuals at the expense of everyone else'e healthcare? I have Sarcoidosis, a genetic condition that means my immune system literally attacks my own body. It's extremely rare. Should I demand that a hugely disproportionate amount of money be spent to cure me so that I can enjoy this theoretical immortality? Seems a bit selfish. That money…

If scarcity was an actual issue, we could collectively decide what a fair distribution of that scarce resource would be. Few things beyond a lottery would be considered fair by most, but we can try.

However, we live under conditions of extreme supply for many things, including most factors that would inhibit healthcare. We rarely need to choose.